Good days with CFS/ME?

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This really confuses me, I have 2 or 3 weeks of feeling dreadful, I can't do anything and I'm literally sofa bound then I have a couple of days of feeling a bit better and then a day where I'm sure I'm better and only have 1 or 2 symptoms but then the next day I'm back to being sofa bound and awfully ill again 😕 It's not always in that order but my symptoms and health changes a lot from day to day, I am also vitamin D deficient and started supplements last Thursday so hoping they help or magically cure me lol.

Does this happen to anyone else? What can I do to stop getting so ill after a couple of good days? X

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12 Replies

  • Posted

    I have learnt to my cost that you have to still pace yourself on a good day. I use a timer and do 6 minutes of stuff about the house then rest for 30 mins before I do another 6 minutes. Pacing and getting used to your body are the hardest things. Good luck x
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    • Posted

      That's a good idea 😊 I think when I'm having a good day even if I don't go out anywhere I do too much around the house! How do you find working with CFS/ME? I had to stop in November and wish I could go back 😔 X
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  • Posted

    This is the nature of the beast. Try to avoid the boom and bust of up and down days. Pacing has worked best for me along with a good regime of supplements.
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    • Posted

      That's good, what supplements do you take? I'm only on vitamin D at the moment. Do you still manage to work? I had to give up last November due to being so ill and un reliable x
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  • Posted

    That's cfs for you. I am exactly the same and when I am feeling okay I overdo it. I am rubbish at pacing but I should try harder because I end up feeling dreadful.

    The other week felt like I had my sparkle back again after being on a roll decorating and went quickly downhill.

    I hate cfs and after 2 years still can't befriend the illness x

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    • Posted

      I think we just get excited about feeling a bit better and overdo it without really thinking lol it's so nice to feel like our old selves again even if it's just for a day.

      Do you manage to work with this illness? I had to give up last November as my job was very hands on and energetic and I was too unreliable x

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  • Posted

    Does it seem to follow your hormonal cycle? (Seemed like you were describing appx 28 days). If so, maybe that's worth looking in to?
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    • Posted

      Yes I deffo feel worse when I am due on and throughout my period but there is nothing hormonaly wrong, I've had every scan possible including an MRI and a laparoscopy in November to remove a ovarian cyst and my surgeon said everything is perfect down there! I thought I had PCOS or endometriosis but nope nothing 😊 X
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  • Posted

    Its what you describe that I suffered for years and eventually helped me on the road to recovery. 

    Pacing is the key here. What I learnt by lots of trial and error was how much I could do on a good day without feeling bad the next. Once I established that base line I then didn't drop so much so I spent less time feeling bad. Very, very slowly I started to increase my level of activity on good days. 

    Its been 2 years now but I feel like I am back to probably 85% of my former self which is a great place to be. 

    So Pace yourself and learn to say No. Its a lot of pain in the sort term for long term gain, best of luck 

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  • Posted

    Hi .. I don't know if your doctor has already told you this Laura . On your good days rest don't think ...good day I'll get loads done . Rest on your good days and your bad days might not be so bad . It took me so long to get my head round that . One thing I wish someone would have told me years ago also is ..pacing. I was always rushing around trying to get things done and then rest . Pace yourself when doing anything . I need to pace now I have no choice . Just wish I knew that a few years back . I burnt myself out trying to work through it .pacing is really important I think . Lx
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  • Posted

    Hi Laura, yes, that is exactly what happens with the illness.  The more you do on a good day, the more you get slammed with symptoms the next few days and perhaps weeks.  My husband even got to where he never had any good days and remained completely bedridden for years - from pushing himself at the beginning when we didn't know what was going on.  Thankfully, you've got support and people who understand, which means so much - something we never had.  So be extra careful on the good days, and only do the most important tasks of all, and make sure that REST is one of those important tasks.  Remember that when using your energy - most of the time, if not all of the time, you WILL pay for it later.  Thankfully, you're still having some good days.  Good luck to you.

     

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  • Posted

    Hi, I didn't manage work, I had 4 months off and went back because I felt guilty. Even though I was on reduced hours I struggled and went off sick again in November 2014. At first work wanted to sack me but luckily have now agreed to ill health retirement and I finish next month. I felt like they finally believed I was ill. You are doing well if you are working xx
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